Haemophobia – Investigating the ongoing effects of stigma on motivations, perceptions, and risks of gay blood

Changes to the status quo regarding gay blood donation began occurring in the late ‘00s, continue in 2018, and are very likely to continue on into the future as Blood Collection Agencies (BCAs) around the world respond to the growing public pressure from advocacy groups and to the mounting clinical evidence that the status quo need not be maintained.

And while I trust my bench-scientist colleagues’ evaluations of the clinical realities of infectious disease screening, I am skeptical that we, the behavioural-scientists, are adequately equipped to understand the decision-making processes of human beings who want to donate blood when the rules affecting them are changed.

In my first blog post on the ASP website I want to lay out the context and rationale for why the research that I will conduct is important, and crucially, timely.

Context – Donor deferrals, “MSM”, and policy development

Some people are not allowed to donate blood. BCAs around the world routinely collect information and evaluate risks to the blood supply, develop clinical strategies, and implement donation deferral policies to clearly define which subgroups in the broader population are and are not allowed to donate blood. Deferrals can be temporary or indefinite; short- or long-term; and cover every known behaviour or factor that puts a potential donor “at-risk” of transmitting an infection through their blood. In short, deferrals are the first line of defense for ensuring the safety of the blood supply. As a result, some people are not allowed to donate blood.

It is perhaps well known that men-who-have-sex-with-men (MSM), including – but not limited to – gay and bisexual men, are deferred from donating blood to some extent by most BCAs around the world. It is similarly well known that the ongoing HIV/AIDS epidemic and the disproportionate number of MSM affected by the disease is the reason for the ongoing deferral from donating blood. While the specifics of the rules relating to MSM vary from country to country, most BCAs maintain a deferral period of at least 12 months from any instance of male-to-male sex (Canada – Berman, 2018; Netherlands – Romeijn, Metz, Kok, de Kort, & van Dongen, 2017; Australia – Seed et al. 2014).

Frustration, non-compliance, and clinical risk

For many MSM a 12-month deferral period amounts to a functional ban on donating. This is a source of frustration among a group of people who have an above-average level of awareness of the progress made in HIV testing. Indeed, as other rights are extended (or perhaps, returned) to this community around the world, BCAs were beginning to look woefully behind the times until recently. So great can be the frustration for some MSM, waiting for any indication that the rules affecting their eligibility might change, that they engage in “non-compliant” donations; i.e. they lie about their sexual history in order to donate.

It is not really my place, or indeed overly useful, to make a moral judgement about MSM donors who do not comply. Given the advances in post-donation infection screening – HIV can now confidently detected less than a week after infection (Haire, Whitford, & Kaldor, 2017) – a 12-month deferral no longer seems to make sense.

(We’ll discuss the role other transfusion transmissible diseases like Hepatitis B and C play in the maintenance of the MSM deferral in a later blog post).

Non-compliance under a 12-month deferral

Due to the illegality of non-compliant donation, it is quite challenging to accurately measure the number of donations that are made by people in deferred groups (speaking not just about MSM; consider those Brits at risk of Variant Creutzfeldt-Jakob Disease, or anyone who has ever injected a non-prescription drug intravenously). Large scale anonymous surveys have been marginally successful in gaining some indication of the scale of MSM non-compliance, although unfortunately many of these studies have lost their relevance as indefinite deferrals have been revised to 5-year and 12-month deferrals (USA – Sanchez et al., 2005; UK – Grenfell et al., 2011). In Australia, where a 12-month deferral has been in place for almost two decades, non-compliance with the MSM deferral was self-reported to be just 0.23% of the male donor population (34 self-identified non-compliant donors out of a sample of 14,476; Seed et al. 2014).

Non-compliance in Australia (and presumably the rest of the world) is a numerically small issue and there are good reasons that it would be. Most MSM, and people generally, adhere to their BCA’s deferral criteria. They might disagree with the deferral and understandably perceive that they are being deferred unfairly on the basis of their membership in a social category rather than on the basis of their own behaviour – but seemingly the vast majority still comply.

And I find the reasons behind that willful decision to not comply with deferral criteria absolutely fascinating. The motivations driving non-compliant behaviour in this context are worthy of study not because the issue is numerically significant but because of the insights that it will provide into risk assessment and decision making in general. With MSM blood donors as a case study, both non-compliant and compliant, I want to understand what psychological factors contribute to their motivation to donate.

Mostly welcome changes

In October of 2017 the English and Scottish BCAs, the National Health Service Blood and Transplant and Scottish National Blood Transfusion Service, announced a very significant change to its MSM deferral criteria. As of November 2017 in Scotland and January 2018 in England, MSM are able to donate blood just three months after their last “at-risk” sexual encounter.

A three month deferral is a very progressive shift in policy that not only reflects clinical realities in 2018 but also feels like an attempt to do right by the MSM community. However, for many MSM a three-month deferral will still function like a lifetime deferral. All MSM who have an active sex life, including those MSM engaging in sex with a single monogamous partner will still not be able to donate blood. While the move to a 3-month deferral is a step in the right direction, it is a bitter pill to swallow when sexually active non-MSM aren’t held to the same standard.

But, it is nonetheless a progressive step.

… I fear perhaps one we have not adequately prepared for.

Non-compliance in the brave new world

I wonder if it is possible that an unappreciated strength of the 12-month deferral for MSM donors is its implied seriousness. A man who has had sex with a man must wait 12 months before donating. For most MSM this probably translates to “I can’t donate blood, like, ever” and, likely with some anger and disappointment, for most MSM that’s that. However, we clearly know that a small number of MSM do donate in spite of the perceived very serious and insurmountable obstacle of a 12-month deferral.

I do wonder about the unintended consequences of moving to a 3-month deferral. For example, how seriously will a 3-month deferral be taken? Seed and colleagues (2014) found just 34 non-compliant MSM donors in their survey of 14,476. However, they also found 24 of those 34 had engaged in same-sex sexual activity within the 6 months prior to their non-compliant donation. Those 24 donors decided that (approximately) 6 months was good enough. I’m sure they made the judgement call that they did not pose a clinical risk to the blood supply (and I’m also sure they were correct in that call – see Germain (2016) for analysis of the actual versus modelled HIV infection rate in countries with a temporary deferral), but I am quite interested in what that decision-making process looks like under considerably different conditions. If 6 months is good enough under a 12-month deferral system, then I am nervous what is going to be good enough under a 3-month deferral system – if non-compliant donors judge it to be just 6 weeks or less then we are steering into clinically risky territory.

My hope is that the MSM of England and Scotland will continue to rationally adhere to the new criteria and continue to have acceptably low non-compliance. But, that hope is cautious. Humans don’t always make the best decisions.

My research will shed some light on this decision-making process, specifically as it applies to the MSM deferral, but with an eye to how (non-)compliance in any setting can be understood and addressed. I want to explore the risk perceptions of MSM donors, and those MSM who would be donors under different circumstances and I want to try to understand the underlying mechanisms that drive non-compliant behaviour. Significant changes are happening in this field and will continue to occur as technology and policy evolves. Now is the time to develop a model for non-compliance, to attempt to future-proof our knowledge base so that today’s research will still be applicable in the context of 2020, 2025, and beyond.

At this stage, four weeks in to my PhD adventure, I am willing to wonder out loud if there is some forbidden fruit effect at play – do non-compliant MSM donors want to donate because they are not allowed to (to challenge stigma? to prove a point?). Honestly, I don’t know yet. And that’s genuinely exciting. I hope in 2020 when we look back at this first blog we will have at least some answers.

Acknowledgement of potential bias

I am a gay man. I used to be a regular blood donor when I was in high school but have not donated blood at any point in my adult life since becoming ineligible. Yes, I’d like to be able to again someday – I have good veins and a high tolerance for needles. I intend to approach these issues agnostically – not overly concerned with the shoulds or should nots of MSM donating and instead focused on the decision-making process of those who do, or would donate in spite of their ineligibility.

I am also currently employed part-time as a research assistant within the Donor Research arm of the Research and Development Division of the Australian Red Cross Blood Service, although here I do not represent them – this MSM and non-compliance research falls under my PhD exclusively.

Some of my friends have questioned how I can rationalize “working for the enemy” given the perceived discrimination MSM are subjected to by the Blood Service. I point to the Australia Blood Service’s relative progressiveness in relation to the MSM community – being among the first, if not the first, BCA to move from a permanent deferral straight to a 12-month deferral. And while yes, there has been little movement in the Australian context for quite some time, that is not the fault of the Australian Red Cross Blood Service, who in 2012 made submissions to the Therapeutic Goods Administration (TGA) arguing for a reduction to a 6-month deferral period. Obviously, the TGA rejected that proposal. The Blood Service’s first goal is to supply safe blood and blood products to Australians in need. And in spite of the enormous effort required to achieve that goal the organization still attempts to make right perceived wrongs – watch this space, a new review is underway.